Caring, not curing
Hospice was created to enhance the quality of life for the dying and their loved ones. Acceptance should remain a key element of that care.

By Jackie Avner
Article Last Updated: 03/16/2008 07:50:22 AM MDT


A geriatric nurse holds the hand of a man at a hospice. (Jens Schleuter/AFP/Getty Images )


For decades, hospice has been the one prominent advocate for a simple and attractive alternative to Americans' lonely, crisis-ridden way of dying. Hospice taught me not to fear death, and brought my extended family closer together in love. It's brought peace to millions of other families as well.

So why is hospice now backing away from its remarkable philosophy, and allowing itself to be used as just another nursing service?

I grew up right next door to my grandparents. Every day, I stopped in to collect a hug from my Grandma, raid the candy jar, and smell the garden flowers gracing their breakfast table. My brothers and I would run up the back steps and into their farmhouse kitchen, eager to see whose stories could send Grandma into one of her fits of giggles.

I was inconsolable when Grandma was diagnosed with Lou Gehrig's disease, a neurodegenerative, terminal illness. Depression and loneliness swept over me. Conversations with Grandma and the rest of my family were difficult and joyless. I felt detached from my family when I needed them the most, and was missing Grandma before she even died.

Then something amazing happened. Hospice gave me and my family a gentle shove out of depression and into acceptance.

As a precondition for hospice care, Grandma was required to stop receiving life-extending medical treatments and receive only palliative, or comfort, care.

My family had to let go of the hope that Grandma's participation in an experimental drug trial would lead to a miraculous cure of her disease. However, we replaced it with the hope that time spent together at home rather than in the hospital would lessen feelings of grief and fear, and bring us closer as a family.

Grandma needed meaning and comfort in her final days, things that loved ones — not doctors or experimental drugs — could provide. Children and grandchildren, suddenly feeling needed, brought out old photo albums, shared their favorite memories, and gave soothing hand and foot rubs.

Hospice's founder, Dr. Cicely Saunders, believed that aggressive medical treatments could interfere with the emotional and spiritual care of dying patients. She thought they were better served by physical comfort, peace and closure than by engaging in medical battle with their illness. Hospice would focus on pain relief and symptom control, neither hastening death nor prolonging dying.

For those who had the courage to trust hospice's approach to living life to the fullest even while dying, hospice provided home health aides, nurses, doctors, volunteers, social workers, chaplains, medicine and equipment. Hospice usually provided care in the patient's own home.

Hospice's staff helped my family see that death can be approached as an important life event, like graduation, marriage, and the birth of children. Each is an opportunity for contemplation, family gatherings, celebration of one's life, and acknowledgment of endings of one sort and beginnings of another.

Saying goodbye to Grandma just before she died, comfortable in her rocking chair at home, was one of the most beautiful and meaningful moments in my life. The depth of love shown by family members who had served as Grandma's caregivers enveloped me, and I was supremely comforted by the fact that my grandma must have felt the same way.

The typical American approach to dying is to spend a great deal of time in hospitals and emergency rooms fighting terminal conditions with every bit of medical technology at our disposal, regardless of the efficacy of the treatment or the financial, physical and emotional price exacted from the patient and his loved ones.

Most Americans choose to fight fatal illness this way because they hope to gain a few more weeks or months of life. In fact, recent studies suggest that patients with many terminal conditions live longer under hospice care than under aggressive medical care.

Nevertheless, many hospices are embracing "concurrent care" or "open access," in which most of hospice's staff and services are made available to all terminally ill patients — not just those who agree to forgo aggressive medical treatment. Patients may receive chemotherapy, for example, while also receiving nursing care from hospice staff members who are expected to leave their philosophy of acceptance at the front door.

Perhaps hospice's shift away from core beliefs should not be surprising. Emotional and spiritual care of the dying don't rank high on the list of priorities of those who now hold hospice's purse strings. Today, even though 95 percent of hospice programs are privately operated, most of their operating budget (84 percent) comes from the federal government rather than from private donations. The government and private insurance companies sense the potential for using hospice to reduce their health care expenditures, and are gradually absorbing hospice into our flawed health care system.

The upside of concurrent care is that an increased number of patients could benefit from many aspects of hospice's wonderful end-of-life care. The downside may be financial ruin for local hospices. The policy permits terminally ill patients the same kind of unfettered and unnecessary consumption of expensive medical services that plagues the rest of our health care system, contributing to skyrocketing costs. Today, hundreds of hospice providers across the U.S. are experiencing serious financial trouble.

Hospice's concurrent care policy threatens that which is most valuable in the hospice movement: leadership and guidance in showing us a better way to live, just before we die. If hospice doesn't provide that leadership, who will?

Jackie Avner is a former hospice volunteer who lives in Highlands Ranch and was a member of the 2007 Colorado Voices panel.
http://www.denverpost.com/psaunders/ci_8564962